xoJane - Fruzsina Eördöghhttp://www.xojane.com/author/fruzsina-e-rd-gh
enCopyright 2015 Say Media, Inc.http://blogs.law.harvard.edu/tech/rssTue, 03 Mar 2015 12:20:30 -0800Exploitation or Awareness? The Complicated Reality of Adalia Rose<!-- tml-version="2" --><p>Adalia Rose is unable to gain weight, is hairless, has vision problems and occasionally dislocates her hip. She probably won’t live to see her 13th birthday, and the odds of her ordering a drink at a bar legally are even slimmer. And yet Adalia, a five-year-old with the premature aging genetic condition known as Progeria, is at the center of a six-month-long global flame war. So why would anyone hate on this child, or her mother, Natalia?</p><p>Adalia Rose is literally everywhere; having originated on Facebook and YouTube, she spread to 4chan in late May before leaping to Reddit, Twitter and Tumblr.</p><p>Adalia Rose wasn’t always the hottest kid with Progeria on YouTube. Her rise began in late spring of 2012, when one particular video of Adalia Rose, posted to her Facebook page by her mother Natalia, caught the attention of 4chan. In the two-minute 26-second video, Adalia Rose dances in a hula skirt to the main theme of Lilo &amp; Stitch.&nbsp;</p><p></p><p>Adalia Rose’s super-thin limbs, bulging belly and baldness inspired 4chan’s most notorious community, /b/, who turned her video --&nbsp; with remixed audio -- into a “new form of trolling,” reports the Internet database <a href="http://knowyourmeme.com/memes/people/adalia-rose">Know Your Meme</a>. Adalia Rose went on to be Photoshopped into various stills from anime and horror movies; her head was digitally placed onto the bodies of various reptiles, cyborgs and aliens. Adalia Rose jokes then made their way onto Reddit, where Redditors complained about <a href="http://www.reddit.com/r/ImGoingToHellForThis/comments/xcthb/progeria/">them</a>.</p><p>Soon after discovery by /b/, the <a href="http://www.youtube.com/watch?v=ci3kSKmsKnQ">Adalia Rose Facebook page</a> went from a couple hundred likes to over 70,000, which then attracted skeptics, haters and dissenters. (The Adalia Rose Facebook page currently has 4.7 million likes.)&nbsp; Recently, official Team Adalia Rose T-shirts have shipped out.</p><p>Six months later, and the little girl is the subject of a <a href="http://www.youtube.com/watch?v=Tg5zQr_RoDY">heated debate</a> The Adalia Rose flame war falls into two camps: Anyone that likes an Adalia Rose-related Facebook status update, such as, “Like this picture if you think she’s beautiful,” is called a “deluded sheep” while the other side retorts anyone calling Adalia Rose ugly is going to “burn in hellfire for all eternity.”</p><p>Searching Facebook reveals more than 100 support and anti-pages with titles like “Adalia Rose, We Love You,” “BAN the ‘Adalia Rose is Ugly’ Page,” “Adalia Rose is not beautiful, she is a butt ugly alien,”a few “R.I.P Adalia Rose” pages, and “Adalia Rose’s mum needs to stop exploiting her daughter.”&nbsp;</p><p>The thousands of rants on YouTube and Tumblr have similarly diverse titles, and the 140-character arguments on Twitter contain so much vitriol that it's easy to forget this is all about a terminally ill child and her financially strained young mother.</p><p>The problem, according to some, is that Adalia Rose is overexposed. And, some say, exploited. Most 5-year-old children don't have Facebook, much less Adalia Rose's active Twitter, Tumblr, and multiple YouTube channels all run by her mother Natalia. Earlier this year, Natalia and fans would post Facebook status updates requesting donations or phrases like “If this picture gets (X number of likes), this little girl’s surgery is free.” The lack of a follow-up or additional information on said status updates provoked more ire from skeptical web communities, particularly Reddit and 4chan.&nbsp;</p><p>“It’s okay to try to get donations or money to help for whatever you want -- It’s the sympathy factor, people are very sympathetic in nature, of course they’re going to help and give you money -- but you’re abusing it,” said 15-year-old YouTuber markknappjr in a July vlog titled: “<a href="http://www.youtube.com/watch?v=cVAOuRlDj9U">To Adalia Rose’s mother. You’re stupid</a>.”</p><p>He continues: “It’s sad. She has such a short life and you’re exploiting her as much as she can.... You tackled the whole situation entirely wrong in my opinion.”&nbsp;</p><p>Then again, who is in a position to blame her? In a recent entry on her Adalia Rose Tumblr titled “<a href="http://theadaliarose.tumblr.com/post/29567682477/the-day-my-heart-shattered-to-pieces">The Day My Heart Shattered To Pieces</a>,” Natalia recounts what it was like learning of her daughter’s diagnosis. Natalia was 18.</p><p>“I did a lot of crying, and a lot of questioning [and] I was in denial for a long time,” writes Natalia.</p><p>“I kept Adalia away from people for as long as I could because when I would go out, people would just stare. I even had people from high school talking about how ugly my baby was. My heart was shattered into so many pieces, and I just wanted to be alone with my daughter. I secluded myself from everyone … even at times from my own family. Even though I lived at &nbsp;home, I never really associated with anyone. I felt much more comfortable being in my room, playing and listening to music with my baby girl.” &nbsp;</p><p>The decision to put Adalia Rose on the Internet, writes Natalia, was “simply to goof around with Adalia, and do something she wanted to do.” After willfully secluding Adalia and herself, Natalia was ready to share her daughter with the world.&nbsp;</p><p>These days, Natalia does not collect money for video views on Adalia Rose's YouTube page, although she easily could. Since the backlash, Natalia no longer posts Facebook status updates encouraging people to “like” her status updates, and all of her recent charity drives in the name of her daughter are for the Progeria Research Foundation. &nbsp;</p><p>A quick call to the Progeria Research Foundation reveals Adalia Rose and her mother Natalia are active members, but the Foundation did not return phone calls to verify if there have been any donations under Natalia or Adalia Rose’s name. &nbsp;&nbsp;</p><p>Then again, so what if Natalia did keep the money she gets from donations? Children diagnosed with Progeria require constant medical attention, and until this week, Natalia and her daughter Adalia Rose were living in a small one-bedroom apartment with Adalia Rose sleeping in the dining room.</p><p>Adalia Rose isn’t the first sufferer of Progeria to become an Internet sensation, but she is the first prominent female sufferer on YouTube. Previous Progeria YouTube sensation <a href="http://www.youtube.com/watch?v=rd4yYtOB2dI">TsimFuckis</a>, who to date has collected millions of views on his videos (Adalia Rose has not), received an overwhelming amount of hate and negative comments with few defenders at the time.</p><p>In general, videos of people with unusual disabilities are view magnets on YouTube. One video of a 13-year-old girl with a terrible growth on her face has <a href="http://www.youtube.com/watch?v=xk7yEj4g5YI">10 million views</a>,&nbsp;while another of two 16-year-old conjoined twins has <a href="http://www.youtube.com/watch?v=BkKWApOAG2g">44 million</a>.&nbsp;Long ago folks would pay 5 cents to see the "freaks" hiding behind a circus curtain, but now the same experience comes for free through a YouTube search.&nbsp;</p><p>Still, it’s hard not to notice how much Adalia Rose likes dancing and playing dress up in front of the camera.</p><p>And whether Natalia meant to or not, she’s succeeded at granting her terminally ill daughter some form of everlasting life.&nbsp;&nbsp;&nbsp;</p><p></p>Videos of people with unusual disabilities are view magnets on YouTube. But what happens when the subject is a 5-year-old girl?http://www.xojane.com/issues/adalia-rose
http://www.xojane.com/issues/adalia-roseIssuesFri, 05 Oct 2012 07:30:00 -0700Fruzsina Eördögh